We have a lot of exciting news to cover from the last update
back in June. Let’s get right to it!
So dad are you working on an update for my blog, or are you going to wait for all the leaves to fall from the trees first???
We mentioned that Ashley would be going to the Cleveland Clinic to see an Otolaryngologist regarding physical issues with speech. Well it turns out the Doctor referred us to the Indiana University Speech and Hearing Clinic in Bloomington. We went there at the end of September. We’ll get back to that later. First we want to go back and recap Ashley’s summer.
Like you, Ashley had a hot summer. In Ashley’s case I am not referring to the weather. August will stand out in particular. In all areas of Emily’s Walk, Talk, Eat barometer Ashley has made
significant gains.
Ash & Em
Ashley’s bone density was tested in August 2009 and as expected, two years after being stuck by ADEM and having limited mobility she had a significant decline in bone density. This last August she had another bone density scan and we are pleased to report that Ashley’s bone density has improved. Since that bone scan Ashley has dramatically increased the duration,
distance and coordination with which she can walk on a treadmill in therapy.
The treadmill is nothing new, but now Ashley can use the treadmill in up to 3 ½ minute intervals before resting and can spend an entire therapy session (1 hour) using just the
treadmill. If you scroll down Ashley’s blog page you will find a picture of her in the treadmill taken in late 2008. She still requires the harness that is visible in that photo. The therapist still needs to keep an eye on Ashley’s stride and occasionally correct her gait, but it is a wonderful sight to see Ashley walking. If you wondered what kind of a workout it is for Ashley we can assure you she’s not afraid to let them see her sweat!
Walking off the treadmill Ashley still requires balance support. She needs reminders to adjust her posture. It’s like working on someone’s golf swing. You make an adjustment to the stance then the swing gets out of alignment; address that and then the head moves. Whereas we take all of our day to day functions for granted (they’re automatic) Ashley still has to think and coordinate the symphony of moves and limb placements to merely walk across the room.
Another tool being utilized at therapy is the Wii. Yes the video game console. There are a series of ‘games’ that involve the use of the Wii balance board. Ashley stands on the platform with a bar to hold onto for balance. In one game she is guiding a girl in a bubble that is flowing down a river. She has to lean forward to propel the bubble forward. The river curves and has folks so she has lean to each side to avoid popping the bubble on the walls that line the river. She usually requires coaxing from the therapist to lean in the correct direction, but she is getting the hang of
it. It’s nice to see technology that is commercially available that can aid Ashley’s recovery.
Ashley is doing quite well transferring in and out of the car and van. We have to take the wheelchair with us, but she doesn't have to ride in it any more.
With drinking Ashley reached a significant milestone as well. Ashley has been able to eat pureed foods and chew small foods for quite some time. Liquids were what proved a challenge. It has only been since July of last year that Ashley was able to consume enough liquids orally that we did not have to supplement her hydration with the feeding tube (which was removed last November).
With eating Ashley has been able to eat solid foods (we still watch her like a hawk) without choking. It still takes a long time to eat as Ashley slowly improves the coordination of her tongue and cheeks when chewing. Ashley has also done well with drinking liquids without a straw from a cup when it is less than half full. One challenge that remained was sipping from a large diameter straw. With a typical disposable straw Ashley could rely on the tongue alone to seal it and get a sip. With a larger straw it requires a tight lip pursing and some cheek muscles. We have a couple of large (20-24oz) cups with hard plastic straws that were very difficult for Ashley to use. We pretty much left them on the shelf; rarely did we pull them out and have Ashley try with them. One find August day at Ashley’s request we filled one of those cups. It wasn’t immediate success, but Ashley must have felt she was ready. Now we use those cups every day.
Chef Ashley stirring the chili to perfection
Ashley’s coordination with eating is also showing marked improvement. At breakfast with oatmeal she can often eat it with minimum assistance. She is able to scoop it, get it to her mouth, purse her lips and get the spoon right back into the bowl.
Ashley celebrated her 24th birthday last month and her favorite gift came from brother Miles; a Belgian Waffle Maker. Ashley has been experimenting with different ingredients and we have been the cooperative (make that eager) samplers.
Ashley was the breakfast chef when we had overnight visitors.
So let’s get back to our trip to the Indiana University Speech and Hearing Clinic. Dr. Milstein from the Cleveland Clinic had worked at the IU Speech and Hearing Clinic and after reviewing Ashley’s medical records felt that IU was better equipped to address all the issues involve with her apraxia (disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked) that contribute to her aphasia (impairment of language ability).
We forwarded Ashley’s records to the doctors at IU and even sent them a video a friend and videographer came in to speech therapy and took of Ashley working on speaking. Our appointment was on the last Friday in September which meant we got to have a visit with Miles who is hard at work on his junior year at IU.
They conducted a myriad of tests on Ashley.
They were able to insert a camera into the back of Ashley’s mouth (for short periods since this did trigger her excellent gag reflex) and we were able to view live, and in slow motion replay, the workings of her vocal cords and associated muscles, ligaments and cartilage. Good news. There was no damage from when Ashley’s airway was intubated at UVa Medical Center as a precaution when she was admitted. Secondly, as Ashley made long ‘E’ and long ‘A’ sounds everything moved as it should. They vocalcord folds moved in unison, opening and closing properly. This meant that there was no visible physical limitation that would hinder Ashley’s speech recovery.
That wasn’t just good news that was great news! Until we saw Ashley’s vocal cords in action that last day of September 2011 no one knew if there was any damage or visible paralysis of the physiology involving Ashley’s speech.
The specialists at IU that put Ashley through her paces to assess where her speech recovery was at produced a report of recommendations that are now being implemented by Ashley’s speech therapists. We ask for your continued prayers that this will result in the complete recovery of Ashley’s ability to talk.
We were blessed to have an opportunity to go to Victory Junction for the fourth time in as many years.
Ashley and Dad on the 'track' at Victory Junction
VJ (victoryjuction.org) was established in memory of Adam Petty, the son of Kyle and grandson of Richard Petty. Before Adam died in a NASCAR crash he was inspired by his father’s philanthropy to establish a camp similar to Paul Newman’s Hole in the Wall Gang Camp where special needs kids with specific ailments could gather and literally have fun in a fully accessible, action packed environment.
Ashley working on the pumkin craft that now sits on the kitchen table as part of our Thanksgiving decor
When VJ invited the Transverse Myelitis Association to alternate each year between a children’s camp and young adults camp it became a twofold blessing. The obvious was that families with a child living with the affects of these rare demyelinating conditions could share and support each other. The other major benefit is that the doctors that have dedicated their careers to the study of, and search for a cure for, these rare afflictions have always given of their time to attend the events.
So for us the handful of days we spend at VJ are priceless.
Ashley has a client at the Fab Shop; hope Al is color blind
Each time we are encouraged by the steady progress that is occurring to understand the mystery of these afflictions and the progress toward harnessing them and improving the life’s of those that are suffering from the debilitating effects of these acute attacks. Being able to speak one on one with the world’s top medical experts and to see their excitement (and we do mean excitement) at Ashley’s annual progress is beyond motivating for both Ashley and the family.
The comradery that we have developed with the other families is also such a source of strength to face the challenges. No two individuals are affected the same by these disorders. What is evident is that there is hope. No matter how young or old when stricken, nor the time that has transpired from the onset of the attack, there is hope for progress. These gatherings reinforce that possibility for everyone.
The devotion of the volunteers at VJ is also a prized gift. There are a few that have been there all four years and the love they pour into making our visit a great experience is a Godsend.
It is always a pleasure to see Sandy and Pauline. We love you too Kazu!Ashley continues to enjoy getting together with her friends. She caught up with former St. Marys and Notre Dame classmates prior to the USC game last month. Although we did not go to the game it didn’t mean we couldn’t have a great afternoon tailgating.
Thanks Jerry for introducing us to your alums. Slainte!Tricker-treaters were greeted at our door by Ashley dressed as if she were caught making herself up for a night on the town donning a bathrobe and curlers in her hair.
Earlier in the day Ashley dressed as a therapist wearing the khakis and black shirt that the staff wears. She even posed for a photo with several of the therapists.
Yes I know what you are thinking. Ashley’s ghostwriter can go on and on. Why does he take so long to post an update? There are some things in life that defy both logic and explanation. What
we have come to rely on is the love and prayers that we are surrounded with. It is not an exaggeration in the slightest to say that each week we learn of someone that has been praying for Ashley and our family. We still wonder, “Why Ashley?” We still don’t understand the answer to that question, but as we witness all the hard work Ashley continues to devote to her recovery combined with the outpouring of love showered on us we trust that He has a plan. Thank you for being a part of it! We love you!
.JPG)
